my husband was diagnosed with secondary terminal cancer june this year, it is in his bowel, liver, some nodes with the prognossis of maybe 2-5 if the chemo hold it at bay. his attiude is so negative and his verbal aggression towards me is getting worse and worse. i had to stop work beacuse i couldnt cope and now he sees me as his carer and that i should be doing everything a carer should be doing. he just doesnt stop, he has shut everyone out and now doesnt like anyone close to him as they are interferring with his life this includes the neighbours, people i work with, doctors and nurses everyone and it seems not to be getting better. he is in hospital for a bowel obstruction which they operationed on wednesday. he sits there and stews alday and then wont say anything untill i turn up and then bang i get it. i am at my wits end and to make it worse we have a four year old daughter who i am trying to keep her routine to normal but then i get the response that i am not doing the caring job that i am his wife. he wont talk to a social worker he thinks that everything is fine it is everyone else. i tried to speak to his oncologist and that got me no where because all they say is that he needs to say there is a problem. he is only 46 and i 38. i just dont know what to do. no one in the area i live no what i am going through and living in a small town doesnt help. he just says that no one needs to no our business. i feel as though he wants to isolate us and i just cant do it. eveyone is at fault. he would be alright if he wasnt so angry. he cant see that i amd grieving too. he thinks we can do it on our own. i no we cant . i have no idea what to do. it has just go too hard in such a short time
Hi Smeggles It is hard to know what to say when you are copping it from all angles. I don't know if your husband was verbally aggressive before his diagnosis or if his personality change has been since then? Please keep visiting this site, as I've found it essential to my mental health and greatly helps to reduce your feeling of isolation. From reading other's experiences, a lot of people have a personality change (which is completely understandable given the traumatic issues they have to deal with plus large amount of drugs and/or chemo toxins in their body). My mother in law who has terminal lung cancer (and not a smoker) was not a nice person prior to her diagnosis and her disposition improved slightly, however, we are walking on egg shells as her moods are so unpredictable. Your message sounds like your husband is still very much in denial, so bringing in the palliative care team will probably make him explode. We didn't know what to do in the early days and how she would react to different issues that cropped up(diagnosed xmas last year) . I don't know if if was the right way to go about it or not, but we scoped out / 'researched' things on our own before bringing them up with her. She has a little bit of medical knowledge from being a vet's receptionist, so you can imagine how that goes. We talked on the phone to the cancer council a fair bit, who were very helpful, plus talking to the staff at the oncology unit. We also rang the palliative care team (the onco unit should be able to give you the contact details if you don't know how to get in touch) at Clare Holland House and went down to talk to someone. At first he was very dismissive of our concerns and sounding very bored, until we'd told him that yes, she had a referral to pal care but had kept cancelling the appointment as she felt she wasn't ready.... yet had had a couple of hospital stays. Another hospital stay in the interim was the turning point for her - an oncology social worker turned up and surprisingly she was very receptive to this beautiful lady - taking most things on board and we felt we were now able to broach the sensitive issues. Pal care have been on board for a few months now and the nurses and doc are absolutely wonderful - when she's on the syringe driver during treatments they pop out every day and she's been queue jumped at emergency since then, so she very much appreciates their help now. She went back to her home last week and insisted she was fine to live on her own.... we didn't feel we could stop her doing this and have as many support mechanisms in place as possible in case something happens. We think she can feel in herself that her independence will be shortlived (she has bony mets in her right hip and left shoulder) so at some stage she'll be back with us or into the hospice. Sorry to rabbit on about my probs, which are quite small now compared to what you're going through. I felt (and still feel) like I'm being pulled in so many directions trying to be everything to everyone and failing miserably. My husband is a contractor and doesn't have any leave left, so I've used up some of my sick leave while she was us having treatment. I did it more for him so he didn't have to worry about getting her to and from treatment etc, but she has 'nasty' days and is very unpleasant to be around, so feeling like 'what's the point'?. One thing everyone keeps telling us is not to take things personally and ignore any nasty things that are said as they are most likely coming from being in pain/discomfort.. however, it's still very hard to take it on the chin. I've found the palliative care staff to be more understanding and supportive of the emotional side of cancer than normal onco staff - please talk to the folks on the cancer council helpline or the pal care mob in your area. Thinking of you and please feel free to email if you feel like venting. My first few posts on here were a rambling mess of rants and raves while I was trying to cope with everything. Take care Zoe
PS.... forgot to add that pal care have home based services that focus on maintaining quality of life, not the end of life (which is what the hospice is there for) - which might be helpful. We also found out just recently about the ACT Carers association - there should be one in your area... We haven't had much to do with them yet but they are there for the carers as an emotional, practical and financial support. I don't know if your hubby would be receptive to talking to other bowel cancer patients? Which might help if he could talk to someone in the same boat as him? I think the cancer council can put you in touch with other peers. My mother in law went on one of those look good feel better workshops and was initially apprehensive, but ended up really enjoying it as she 'clicked' with another lady who had a rare type of cancer (the rest of the ladies were breast cancer patients) and felt she really benefited from talking to someone else facing the same issues she is. She also had her first lot of treatment in Wagga and we stayed at the Cancer Council's Lilier Lodge for the 3wks - it was such a great support meeting other cancer patients and making friends with people in the same isolating situation as yourself. One lady was there with her mother who was very difficult to be around and I hoped it helped her to be able to come down after dinner and sit with other carers to chat etc. Take care Zoe
Hi Smeggles, I am sorry to hear what you and your family are going through. I know there are people on this forum who will be able to provide you with advice from a carers perspective. I am a patient in my 30's with a partner & 2 young children so have a little bit of an idea about what your partner is going through. I think you say in your message that your husband was dx in June of this year? That is really not long ago. He would have so many things going through his head right now, he obviously has a loving partner and a little girl to think about, his main concern would be for the both of you...even though he is not showing it. He may be pushing you away in order to prepare you for life without him, or he may be still coming to terms with everything he has been told which is a very lonely time. A lot of cancer patients, have a moment where the light bulb goes on, he will possibly reach that stage, right now he has the fight or flight instinct kicking in, talking to other patients might be good for him. You say you are grieving, & I know it must just be terribly hard for you to watch someone you love struggling and taking it out on you in the process. But I would suggest, hard as it may be that you save the grieving for later and celebrate life everyday. People do survive grim cancer diagnosis' even when they have been given limited chance for survival. Maybe in his own way he is working on acceptance & needs time and breathing space in order for this to take place. Why dont you seek out a support group for carers only to help you deal with everything. the cc would be able to point you in the right direction and obviously being on here is a great starting point. Take time for yourself and remember that it is probably the disease talking, plus the chemo which does make you feel ill, frustrated and pretty horrible. I would not be talking to him about palliative care until his Doctors recommend it. There is always a chance he will survive! & until he is ready to accept otherwise just allow him to go through the process at his own pace, he will know when and if the time comes when he requires additional care. All the best, and take care Butterfly
Hi Smeggles, I have sent you an email in response to your Message. I understand how you are feeling and how lonely this time can be. You are amongst friends on this site so keep coming in and reading through the different posts.
thankyou all so much it is like a hole new has opened up and i dont feel so alone. Mick is still in hospital and it is taking a bit longer to recover but things are slowly turnign around and he has taken a few baby steps which is great. at the moment the anger is gone and frustration is appearing as he just want to come home. I spoke to the social worker today and we spoke about the pal team which would be good for all of us, especially that they will come to my home. mick didnt want anything to to with the social worker but today he spoke to him for 10 minutes which is a start and a good one since he thinks that he can do it on our own as he says. the other small step was towards acceptance he said to me that "you no i wil go yellow". due to the cancer in the liver and i just replied i know that and we will deal with it when and if it happens. this was a hugh step for him. readign through your replies doesnt make me feel so alone, that there are similar people out there like my family and i dont feel so isolated and the social worker made me feel that way too hopefully Mick will speak to hinm on thurday when i am not around, again thankls heaps for your advice and concerns smeggle
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